ALS Advocacy

Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, February 22, 2018

You Can Pay A Consultant The Big Bucks

Or you can simply take the earmuffs off.

A high-energy advocate for those with ALS left some advice on a Facebook post. Surely any trustee of an ALS organization could find an actionable item or two or five or ten that would improve your effectiveness. Surely.

1. Educate the reps on Medicare & Medicaid so they can assist families in navigating the healthcare system.2. Educate HHCs (hi, Bayada) and the reps and advocate for the proper Medicare Home Health benefit to be implemented.3. Use existing technology to make filling trials easier and accessible to more people. Remote data collection, travelling nurses trained in specific trial protocols. Encourage researchers and pharmas to use innovative trial design. 4. Financially assist families who have lost their homes in recent disasters.5. Use a proactive approach to care in the “excellent clinics”. Teach breath stacking and respiratory strength training. Give each family an ambubag and show them how to use it. Encourage early use of the cough assist machine. Use ongoing outpatient OT/ PT services to maximize independence. Discuss specific equipment and what each piece does before it is needed. Show families more than one brand of any given item. 6. Train the reps on communication equipment, high tech and NO TECH.7. Do not allow a chapter to accept donations for the care of one pALS.8. Allow reps to make home visits beyond the initial intake.9. Stop bragging about getting Radicava pushed through the FDA until you are ready to help people actually access it.10. Don’t allow pharmas to price gouge us just because we are desperate.11. LEAD the fight to protect Medicaid from block grants that will directly hurt our community. 12. Make a graphic organizer so we can understand all the consortiums.13. Don’t block advocates from your social media accounts. That is stupid.14. Fund the research & trials the community tells you to fund.